Want your medical records? Be prepared to pay – a lot

Earlier this week, the CBC radio show Superior Morningbroadcast a story about a Thunder Bay woman who was shocked to learn that getting a copy of her medical records would cost $617.

Beyond the obvious – that 600 bucks is quite an exorbitant price for a bunch of photocopies – the piece just begs us to ask some follow-up questions, chief among them: Who owns your medical records?

The law is pretty clear on this point: The information belongs to the patient but the physical record belongs to the person or organization responsible for its creation (meaning the physician or hospital in most cases). The Supreme Court ruled on this issue in 1992 in the landmark case McInerney v. MacDonald.

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A patient has the right to see the content of the record for almost any reason; the only exception is if revealing the information will cause substantial harm to the patient or others. That doesn't mean you can traipse into your doctor's office and demand the file at any time, but you can make an appointment to do so, and you can ask for copies. The physician or hospital can, in turn, charge a "legitimate" fee for providing the documents. Most provincial medical associations have guidelines on this issue.

So why would you want a copy of your medical records? The most common reason is for insurance purposes. Insurers can demand this information before selling a policy or settling a claim; so too can workers' compensation. Patients may also just be curious or interested in tracking their medical history. This is actually not a bad idea. An informed patient is usually a healthier and safer patient.

But, as anyone who has read medical files will know, they aren't always easy to read. They can also contain mistakes, from banal to substantive, which can affect your insurance coverage and treatment. You can request corrections. Physicians are responsible for what is in the files: In a few, rare cases, doctors have been sued because their patient notes were considered libellous, or they have been subject to formal complaints. In one infamous case, a patient complained that his physician had labelled him an "SOB" when, in fact, the notation was that he suffered from "shortness of breath."

Finally, patients often request their records when they change physicians. When practices close, physicians have a legal obligation to inform their patients and to ensure records are secure. (Doctors are legally obliged to keep records for seven years after the last entry.) In most cases, they turn the records over to so-called health-information custodians, private companies that do physical and electronic storage and make their money by charging fees for access.

In the case highlighted above, Wendy Doran saw an ad in The Thunder Bay Chronicle-Journal saying her long-time physician's practice had closed and telling patients to contact Record Storage and Retrieval Services Inc. (RSRS), a well-established company in the field.

Files usually can be transferred to another physician at a minimal cost. But, in this instance, the practice closed suddenly, leaving patients in the lurch, especially because of the severe shortage of doctors in Northern Ontario.

When Ms. Doran contacted RSRS to get her records, she was quoted a fee of $617. Her file was substantial, well over 1,000 pages and, to be fair to the company, the process is labour intensive. Records have to be disassembled, scanned, read carefully to remove references to others (in accordance with privacy laws), then photocopied. The company said that, in 16 years of operation, it has never denied a patient records due to an inability to pay and it is working to get Ms. Doran the documentation she needs. This is voluntary because providing records is not a regulated medical service, so companies can charge what they like.

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The Thunder Bay case, of course, involved paper records. What will happen when medical records in Canada are finally in electronic form? In theory, patients should have unfettered access: Their medical records should be a mouse-click away. But, in practice, how will that work? Ensuring privacy is one of the challenges in the switch to electronic records; the answer has been to password-protect files and audit to ensure there is not inappropriate access. Will patients be provided with a password to access their own files? What if a patient then chooses to copy records and post them on her Facebook page?

In a survey of 3,700 physicians in eight countries, published just last week, only 31 per cent of doctors said patients should have full access; another 65 per cent said access should be limited, while 4 per cent said patients should have no access to their electronic records.

That is not exactly a ringing endorsement of transparency and patient-centred care. As we demand individuals take more responsibility for their health, and as health professionals move to work more in teams, access to electronic health records will become increasingly important. Physician and patient groups, along with regulators, should hash out some ground rules now rather than leave it to the courts to resolve disputes.

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